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The effectiveness of efforts designed to address mental illness stigma will rest on our ability to understand stigma processes, the factors that produce and
sustain such processes, and the mechanisms that lead
from stigmatization to harmful consequences.
Critical to such an understanding is our capacity to
observe and measure the essential components of
stigma processes. This article is designed to assist
researchers in selecting or creating measures that can
address critical research questions regarding stigma.
Our conceptualization of stigma processes leads us to
consider components of labeling, stereotyping, cognitive separating, emotional reactions, status loss, and
discrimination. We review 123 empirical articles published between January 1995 and June 2003 that
have sought to assess mental illness stigma and use
these articles to provide a profile of current measurement in this area. From the articles we identify commonly used and promising measures and describe
those measures in more detail so that readers can
decide whether the described measures might be
appropriate for their studies. We end by identifying
gaps in stigma measurement in terms of concepts
covered and populations assessed.
Keywords: Stigma, discrimination, public attitudes, measurement, social rejection.
Schizophrenia Bulletin, 30(3):511-541, 2004.
The Surgeon General's 1999 report on mental health
notes that there is a strong consensus that "our society
no longer can afford to view mental health as separate
and unequal to general health" (p. vii, Executive
Summary, U.S. Department of Health and Human
Services 1999) and that stigma "deprives people of their
dignity and interferes with their full participation in
society" (p. 6, 1999). From the vantage point of the
Surgeon General's report, if we are to improve mental
health and mental health care, we must address stigma.
511
Abstract
B.G. Linketal.
512
sidered deviant by a society that might initiate the stigmatizing process. Stigma takes place when the mark links the
identified person via attributional processes to undesirable
characteristics that discredit him or her in the eyes of others.
Jones et al. proceed to identify six dimensions of
stigma. Concealability
indicates how obvious or
detectable the characteristic is to others. Concealability
varies depending on the nature of the stigmatizing mark
such that those who are able to conceal their condition
(e.g., people with mental illness) often do so. Course
indicates whether the stigmatizing condition is
reversible over time, with irreversible conditions tending to elicit more negative attitudes from others.
Disruptiveness indicates the extent to which a mark
strains or obstructs interpersonal interactions. For
example, interaction with people with mental illness is
sometimes experienced as disruptive by others because
of a fear of unexpected behavior by individuals with
mental disorders. Aesthetics reflects what is attractive
or pleasing to one's perceptions; when related to stigma,
this dimension concerns the extent to which a mark elicits an instinctive and affective reaction of disgust.
Origin refers to how the condition came into being. In
particular, perceived responsibility for the condition
carries great influence in whether others will respond
with unfavorable views and/or punishment toward the
identified offender. The final dimension, peril, refers to
feelings of danger or threat that the mark induces in
others. Threat in this sense can either refer to a fear of
actual physical danger (e.g., from a communicable disease such as leprosy) or exposure to uncomfortable feelings of vulnerability (e.g., uneasiness or guilt resulting
from watching a disabled person negotiate a flight of
stairs).
Conceptualizing Stigma
From the vantage point of the person who is stigmatized, emotions of embarrassment, shame, fear, alienation,
or anger are possible. Thomas Scheff (1998) has, for
example, argued that the emotion of shame is central to
stigma and that shaming processes can have powerful and
hurtful consequences for stigmatized persons. For all of
these reasons, we believe that emotional responses and
reactions need to be included in the broad conceptualization of stigma.
Status loss and discrimination. When people are
labeled, set apart, and linked to undesirable characteristics, a rationale is constructed for devaluing, rejecting,
and excluding them. This occurs in several ways. The
most obvious is individual discriminationfor example,
when a person rejects a job application or refuses to rent
an apartment to a person with a mental illness. However,
there are also more subtle mechanisms through which
labeling and stereotyping lead to negative outcomes. One
of these is structural discrimination, in which institutional
practices work to the disadvantage of stigmatized groups,
even in the absence of purposeful discrimination by individuals. For example, schizophrenia receives low levels
of funding for research and treatment relative to other illnesses, and treatment facilities for schizophrenia tend to
513
Characterization of Current
Measurement
In this article we evaluate current measurement practices
in research on mental illness stigma based on a search
(MEDLINE and PSYCHLIT) completed in July 2003. In
both search engines, the search word "stigma" included
the key terms of "prejudice," "stereotyping," "public
opinion," "attitude to health," or "attitude." Likewise,
the search words "mental disorder" included the key
terms of "diagnosis," "drug therapy," "psychology,"
"education," "epidemiology," "etiology," "genetics,"
"therapy," and "history of." The search spanned from
January 1995 to June 2003. In MEDLINE, 523 articles
were identified with both search terms in the title or
abstract; PSYCHLIT yielded an additional 161 articles.
To be included in the data base, an article had (1) to be
about an identifiable aspect of stigma that pertained
specifically to psychiatric disorders, (2) to be an empirical study or literature review, and (3) to have an English
text and abstract. A total of 95 empirical studies and 13
literature reviews were identified. Examining the reference lists of identified articles and conferring with
researchers in the field yielded an additional 14 empiri-
514
be located in isolated settings or disadvantaged neighborhoods. Finally, once cultural stereotypes are in place,
they can also have negative consequences that operate
through the stigmatized person him- or herself via
processes specified in modified labeling theory (Link et
al. 1989), stereotype threat (Steele 1997), and stigma
consciousness (Pinel 1999). Thus, there are a variety of
wayssome working through nonlabeled individuals,
some working through labeled individuals, and some
working through societal institutions, some direct and
obvious and others notthrough which labeling, stereotyping, and separating result in poor life outcomes for
stigmatized persons.
Dependence of stigma on power. A unique feature
of Link and Phelan's (2001) conceptualization is the
idea that stigma is entirely dependent on social, economic, and political power. Groups with less power
(e.g., psychiatric patients) may label, stereotype, and
cognitively separate themselves from groups with more
power (e.g., psychiatrists). But in these cases, stigma as
Link and Phelan define it does not exist, because the
potentially stigmatizing groups do not have the social,
cultural, economic, and political power to imbue their
cognitions with serious discriminatory consequences.
Without a reference to power differences, stigma
becomes a much broader and less useful concept that
might be applied to lawyers, politicians, Wall Street
traders, and white people.
With vignette
Without vignette
Experiment
With vignette
Qualitative
With interviews or
participant observation
Literature review
74
60.1
7.3
65
52.8
20
16.2
19
15.4
0.8
17
13.8
2.4
14
11.4
14
11.4
Note.Total n = 123; percentages do not add up to 100 percent because of use of more than one methodology by studies.
coded to reflect the country in which they were conducted or, in the case of literature reviews, written. The
most common location was North America (United
States or Canada; n - 62 or 50.4%). The next most frequent locations were Europe (United Kingdom,
Germany, Greece, Ireland, Italy, Austria, and Sweden; n
= 31 or 25.2%), followed by Asia (Hong Kong,
Singapore, Japan, China, and India; n = 12 or 9.7%), and
Eurasia (Australia and New Zealand; n = 12 or 9.7%).
Relatively few studies or literature reviews were carried
out in the Middle East (Israel and Turkey; n - 4 or 3.2%)
or Africa (Ethiopia; n = 2 or 1.6%). One reason for this
could be that we restricted our review to English language journals. Even so, given the relevance of crosscultural research to understanding stigma processes,
information from Asia and especially Africa seems to be
dramatically underrepresented.
Stigma Components Assessed in Reviewed Studies.
The studies were categorized by the stigma components
identified by Link and Phelan (2001). Behavior was coded
if the study introduced the actual behaviors indicative of
mental illness (e.g., a vignette of a person who heard
515
Without vignette
Definition
Definition
The study introduces the actual behaviors indicative of
the presence of mental illness as a stimulus.
28
25.7
Labeling
20
18.3
Stereotyping
68
62.4
Cognitive separating
18
16.5
Emotional reactions
27
24.8
Status loss/discrimination
(expectations)
64
58.7
Status loss/discrimination
(experiences)
15
13.8
Structural discrimination
1.8
17
15.6
Note.Total n = 109 (excluding literature reviews); percentages do not add up to 100% because of use of more than one stigma construct by investigations.
516
Behavior
42,78
25,47,61,68,72,74,
76,87,92, 102, 104,
114, 120, 121
10, 18, 19,22,25,26,
29,31,38,42,47,61,
62.67.68.71.72.74.
36,86
2,12,36,52,86,95,
101, 111
Labeling
Cognitive
separating
Stereotyping
12
Behavioral
responses to
stigma
11,33,34,59,62,63,
65,75,85, 113,
115, 122
11, 13, 15,40,58,59,
79,82,85,88,103,
106, 115, 122
3,28,51
1,5,6, 14,20,23,28,
23,28,49,51,53,54,57
66,77,80,99, 100
1 ,5,6, 14,21,23,49,
53,57,77, 100
3 ,5,6, 14,20,21,
Experimental
vignette
Method
45
45
45
Experimental
no vignette
Note.Numbers represent identification numbers for stigma articles found in reference section from 1995 to 2003.
101
Status loss/
discrimination
(experiences)
Status loss/
7, 36, 52, 86
discrimination
(expectations)
91-94,96, 102-104,
106-110, 112, 114,
115,120-122
8-10,15,26,31,35,
63, 68, 75, 78, 85, 89,
103-105, 108, 110,
114, 115, 120, 121
Emotional
reactions
Survey
no vignette
2,7,52,86,95, 101,
111
Survey
vignette
Behavior
Stigma
component
118
98
Qualitative
content analysis
11,32,70
11,70, 101,113
9,32,70,86,87, 104
9,32,70, 104
70, 86,97,101,104
86, 101,104
Qualitativeinterviews or
participant
observation
F
C
5'
Children and
adolescents
General
population
Professional
groups (health
providers/other)
86, 101
Labeling
1,86, 101
14,21,42 32 70
5,6, 14,21,23,
42, 49, 53, 57, 77,
78, 100, 111
Cognitive
separating
74,86
25,36,45,61,72,
76,87,92, 114,
120, 121
Stereotyping
14, 18,20,22,42,
1, 74, 86, 101 2,5,6, 10,12,14,
47,52,54,68,71,
19,20,23,25,26,
72,94-96, 102,
28,29,31,36,38,
95-97, 123
42,45,53,57,61,
104
72, 76-78, 80, 83,
84,89,91,92,94,
96,99, 100, 110,
111, 116,120,
121
14,20,21,52,54,
66, 95, 104
Families of
people with
mental Illness
67,95
32
47,68,72, 102,
104
70
70
70,85,96, 103,
109
Emotional
reactions
3,8, 10,26,28,
31,51,78,89,
108, 110,114,
121
9, 15,68,104
32,35,63,115
70,75,85, 103,
105
Status loss/
74,86
discrimination
(expectations)
3,7,8,10,19,20,
21,23,25,26,28,
29, 36, 38, 42, 45,
51,53,57,61,72,
76, 78, 80, 87, 89,
91,92,94,96,99,
100, 108, 110,
112, 114, 120,
121
9,15,20,21,42,
47, 52, 54, 66, 68,
72,94,96, 102,
104
40,70,96, 103,
109
Status loss/
discrimination
(experiences)
34
11,33,59,62,63,
82, 115, 122
11, 13,32,58,59,
79,88, 106,
115, 122
Behavioral
responses to
stigma
101
12
15
Note.Numbers represent identification numbers for stigma articles found in reference section from 1995 to 2003.
518
Behavior
People with
mental illness
519
520
521
522
Perceived Devaluation-DiscriminationGeneral
Public Link (1987) constructed a perceived devaluationdiscrimination measure to test hypotheses associated with
the "modified labeling theory." The measure assesses a
respondent's perception of what most other people
believea key feature of modified labeling theory. Link
(1987; Link et al. 1989, 1991, 1997, 2001) developed a
12-item perceived devaluation-discrimination measure
that asks respondents the extent to which they agree or
disagree with statements indicating that most people
devalue current or former psychiatric patients by seeing
them as failures, as less intelligent than other persons, or
523
524
Measures Applicable To
Patients/Consumers
525
make them feel set apart, different from other people, and
ashamed. Once again, this scale correlates as expected
with other scales: perceived devaluation-discrimination
0.48, rejection experiences 0.28, and withdrawal 0.48. In
addition, feeling different and ashamed is more strongly
correlated with self-esteem (0.50) and depressive symptoms (0.51) than any other stigma scale mentioned above.
These correlations are consistent with the possibility that
other stigma variables have their effect on self-esteem and
feelings of depression through feelings of being different
and ashamed.
The items in some of the measures associated with
modified labeling theory (perceived devaluation-discrimination, secrecy, withdrawal, and education) are published
in the American Sociological Review (Link et al. 1989).
However, all of the items for all of the newly developed
and revised scales are available in the spring 2002 issue of
Psychiatric Rehabilitation Skills (Link et al. 2002).
Measurement Biases in Self-Report Measures of
Stigma Components. As with other measurement
approaches, there are potential biases associated with
using self-report measures of stigma experiences or
stigma feelings. For example, Major et al. (2002) have
indicated that measures of neuroticism can be associated
with the perception of being stigmatized and with measures of well-being, thereby bringing into question any
causal link between stigma and well-being. Similarly, a
person who is unemployed, isolated, or beset by low selfesteem may seek to explain his or her disadvantaged status by invoking stigma. In such a scenario, levels of measured stigma do not cause bad outcomes but are instead
consequences of those outcomes. There is no single prescription for avoiding such biases. Instead, one needs to
carefully consider these possibilities as threats to validity
and seek ways of addressing them. For example, one
might include a measure of neuroticism (or other such
confound) in one's measurement protocol (Major et al.
2002), employ multiple approaches to assessing stigma
rather than relying on self-report alone, or craft measurement and design features that help address potential confounds such as these (e.g., Link 1987).
526
Measurement of Stigma-Relevant
Behavior
The final component of the Link and Phelan (2001) conceptualization of stigma is status loss and discrimination. Clearly, assessing either status loss or discrimination involves the measurement of behavior. Although
most of the measures described above imply that discrimination is a likely consequence of the attitude,
belief, or behavioral intention expressed, very few aim
to assess discriminatory behavior directly. Why? The
reason is that when we seek to measure discrimination,
our intent is to determine whether and to what extent
people with mental illnesses are denied access to the
good things our society affords and are differentially
exposed to the bad things it confers. The measures we
use to assess discrimination can include employment
status; social network ties; access to medical treatment;
hiring decisions; influence in group situations; or being
shunned, put down, or ignored. None of these are in and
527
528
529
B.G. Linketal.
to being identified as a psychiatric patient, social isolation, and fear. Significantly, this study suggests that the
hazards of living in low-income, high-crime environments, and having few economic resources compounded the stress related to stigma. These individuals
experienced social exclusion because of stigma related
to their mental illness and because of poverty secondary to their disability. Thus, stigma related to mental illness does not operate in isolation, but in concert
with other challenges in the lives of psychiatric
patients.
Qualitative studies in the literature on stigma of
mental illness vary widely in their treatment of
stigmafrom relatively superficial reports of the experience of "stigma" or the fear of being stigmatized, to
deeper exploration of certain components (usually status loss, discrimination, stereotyping, and labeling). Of
note, these studies are few in number in the current
review (table 1). The underutilization of qualitative
methodologies is significant given that certain aspects
of stigma can best be explored through the use of qualitative research.
Gaps in Measurement
Our review is intended not only to help researchers
locate suitable measures but also to identify gaps in the
use or availability of measures. Our review revealed
several prominent areas of inquiry that appear to be
understudied.
Structural Discrimination. Earlier in this article, we
referred to the concept of structural discrimination,
which we conceptualize as institutional practices that
work to the disadvantage of stigmatized groups and
that allow extensive disparities in outcomes even when
direct person-to-person enactment of discrimination is
absent. We found this form of discrimination almost
entirely unaddressed in the log stigma papers we
reviewed. While issues of structural discrimination
(e.g., insurance parity for people with severe mental illnesses) are discussed in the literature, they have not
been integrated into the literature on stigma. Any complete accounting of the processes that disadvantage
people with mental illnesses must incorporate such
phenomena. One way to do this is through ethnography. Classic studies such as Goffman's (1961) Asylums,
Caudhill's (1958) The Psychiatric Hospital as a Small
Society, and Estroff's (1981) Making It Crazy are
excellent examples of how this can be achieved. At the
same time, quantitative researchers interested in stigma
should attend to this by investigating, for example, the
530
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previous drafts. We thank Richard Carpiano for his careful review of the manuscript and for assistance in constructing the data base of stigma articles. Special thanks to
Emeline Otey for comments on previous versions and her
extensive support for this undertaking.
The Authors
Acknowledgments
Support for this article was provided through Purchase
Order No. 263-MD-20281 from the National Institute of
Mental Health, National Institutes of Health, Department
of Health and Human Services; as well as grants 5T32
MH 13043 to Dr. Link, NIMH K02 MH 65330 to Dr.
Phelan, and NIMH K01 MHO 1691 to Dr. Collins. We
thank Matthias Angermeyer, Patrick Corrigan, David
Penn, Elmer Struening, and Otto Wahl for comments on
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